Survivorship

Cancer survivors can face all kinds of challenges as a result of their diagnosis and treatment, from physical, emotional, social, spiritual, through to financial challenges. We wish we could say that health initiatives are in place that address survivorship and quality of life issues such as the coordination of care, patient-provider communication, palliative care and pain management. However, survivorship is new on the agenda in the UK. In light of these concerns, public health initiatives aimed at understanding and preventing secondary disease, recurrence, and the long-term effects of treatment are essential but not yet in place.

The survivorship framework

There are some things you can do to live the life you want. You have to remember that cancer changes survivors forever. Getting back to “normal” routines can be a challenge after waging such a war. Don Joseph Gowey survived a brain tumor and has spent more than a decade helping people with life-threatening illnesses move from a fearful to a peaceful life. Gowey offers these tips to cancer survivors struggling to find a new and better life.

Love yourself totally. Practice it by imagining that someone who loves you dearly is sitting next to you, holding your hand as you learn to hold yourself with that much love.

Admire your courage for surviving this long, against such difficulties.

Don’t be afraid. Make being at peace your number-one goal. Start each day by feeling peace in your heart and extend peace from your heart to the world.

Go slowly. Close your eyes and say: Please, mind, go a little slower. Think a little less. Relax a little more. Then breathe. Go out into the world and smell the roses. Hug the people you love. Listen to the birds sing. Be alive with the feeling of life every chance you get.

Forgive everyone and every bad thing that has happened so completely that you hardly see it any more.

Make a pledge that from this day forward you will never worry about another thing, including cancer.

Spend time in nature whenever you can, even if it’s only looking out your kitchen or office window.

Don’t judge anything that occurs. Enjoy the dance of life on earth. It and love aren’t supposed to make sense. Listen to yourself and others with such empathy that it no longer occurs to you to judge any part of what you are hearing or feeling or seeing.

The moment you feel stress in your mind or body, stop whatever you are doing and let go completely.

And be at peace, no matter happens. Always return to peace. And never again forget how brave and beautiful you are.

30,000people use brainstrust’s accredited online information and support

2351 members of our online community helping each other to feel less alone, less afraid and more in control.

“This note is to say ‘Diolch o galon’ (thanks from our hearts). We are so proud of you – you don’t know us yet we lean on you, you have no obligation to help us but you do, and every time we feel down, you inspire us to keep on fighting.” – brain tumour carer, Wales.

Registered with the Charity Commission for England and Wales as Charity No. 1114634 and with the Office of the Scottish Charity Regulator as Charity No. SC044642

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

Select the year of diagnosis using the drop down menu.

Select your patient group of interest from the four drop down menus in the following order:

Tumour group

Age at diagnosis

Region of England

Gender of patient

To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

Data is not yet available for the selected year from Public Health England.

Data is not available because the data quality is too poor to release this statistic.

Data is not available as the statistic is not appropriate for this group.

Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.